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Sickle Cell 101

@sicklecell101

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Largest sickle cell digital advocacy org
— sickle cell disease + sickle cell trait
— certified educators + experts
— send questions to [email protected]

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Who do you do this for? September is Sickle Cell Awareness Month! We're honoring everyone living with sickle cell disease, and the people who love them most. Tag or shout them out your sickle cell faves, even ones that have gained their wings. Let them know you know.

"Strength ain't the absence of struggle. It's the decision to keep shining through it anyway." This September, dusted off and updated our awareness poster to reflect our National Sickle Cell Awareness Month celebration. This piece is a Sickle Cell 101 and Ashlie Kégo collaboration. This afro-cubism piece took bold geometry and turned it into a love letter to the sickle cell community in observance of Sickle Cell Awareness Month.

#SickleCellAwarenessMonth #SickleCell101 #sicklecell

Ashlie Kégo lives with two sister with sickle cell disease, one of them being the Executive Director of Sickle Cell 101. She cites this piece with the following meaning: "The red ribbon symbolizes awareness, while the healthy and sickled blood cells represent the realities faced by millions around the world. The radiating lines speak to resilience, hope, and the strength of a community that continues to advocate, endure, and thrive. Through this piece, I hope to spark conversation, increase awareness, and honor every individual and family affected by sickle cell disease." by @sicklecell101

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a month ago

Story time!! It’s #SickleCellAwareness Month!!

#sicklecell #sicklecell101 by @sicklecell101

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a month ago

Nobody:

Absolutely nobody:

Sickle cell fatigue: “Go ahead… close your eyes for a second.” 😴😂

Three hours later…

#netflixdocumentary #sicklecell #sicklecellawareness by @sicklecell101

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3 months ago

“Check out our beautiful birthday features 😍 Happy birthday to those in our community born in October.” #sicklecellwarriors #libraseason #scorpioseason by @sicklecell101

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6 days ago

👇🏿 Drop your advice for parents with a newly diagnosed baby with sickle cell disease.

It’s important to remember you’re not alone. Not only do you have a community, you should have a medical team to help take away some of the guesswork when it comes to caring for a child with sickle cell disease.

Questions? Send them to ask@sc101.org, our team is here for you.

#sicklecell101 #sicklecell #sicklecelldisease #newbornscreening by @sicklecell101

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9 days ago

“I’m a physician, and navigating the healthcare system can still be really hard.”

If it’s hard for doctors, imagine being 18 and walking into an ER that has never seen your records. Dr. Jacob, pediatric hematologist and Director of the Pediatric Sickle Cell Program at Riley Pediatric Cancer and Blood Disorders, breaks down what every young adult with sickle cell should know by heart before moving to adult care:

1️⃣ Your genotype
2️⃣ Your baseline hemoglobin
3️⃣ Your medications

Knowing your numbers means you can speak up when something doesn’t add up.

All 4 episodes of What Good Care Looks Like for Kids with Sickle Cell are out now. Listen through the link in bio.

This series is brought to you by Sickle Cell 101’s Care and Treatment 101 Educational Initiative, made possible by our sponsors Vertex, Chiesi, Pfizer, and Medunik.

#sicklecell101 #sicklecell #sicklecelldisease #transitionofcare #knowyournumbers by @sicklecell101

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13 days ago

If you missed Ask the Experts Live with NY’s first sickle cell gene therapy recipient @sbelevation, watch it here!!

#sicklecell #genetherapy #sicklecellawareness by @sicklecell101

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15 days ago

“All that was normal for me until I got around other kids and realized that it wasn’t.”

Meet Kaya, a podcaster and content creator from South Florida, living with sickle cell disease.

Kaya was diagnosed when she was just a few months old, so hospitals and doctor’s offices were a normal part of growing up. Her mom raised her to live as normal a life as possible, and she focused on the good parts. But adult care is nothing like child care, and today Kaya describes living with sickle cell as a weight on her shoulders. It means never knowing how you’ll feel on any given day, and finding creative ways to build a life and a career on your own terms.

One thing Kaya wants people to understand is how serious this illness is. Sickle cell warriors see the same doctors that cancer patients do, except they will live with sickle cell for life. Her ask is simple: treat us the way you would treat someone with a serious illness.

Happy National Sickle Cell Awareness Month. Thank you, Kaya, for trusting us with your story.

#sicklecell101 #sicklecell #SickleCellAwareness #NSCAM2026 by @sicklecell101

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16 days ago

What makes you most hesitant about gene therapy?

This Tuesday September 29th ask your questions about gene therapy from someone who has lived it. Sebastien Beauzile underwent gene therapy in 2024. Hear about how his life is now! Register now: https://sc101.link/sebe

#sicklecell #sicklecellawareness #genetherapy by @sicklecell101

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19 days ago

4 approaches researchers are exploring to treat sickle cell disease, from boosting fetal hemoglobin to gene therapy.

Each one targets a different root cause of sickle cell complications, and together they point to one goal: better treatment options and a better quality of life.

Which one are you most curious about? Drop it in the comments.

#sicklecell101 #sicklecell #SickleCellAwareness #NSCAM2026 by @sicklecell101

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20 days ago

We’ve got Sebastien Beauzile (as seen on the Tamron Hall Show) answering questions about his experience undergoing gene therapy for sickle cell disease!

Don’t miss out!! Happening on Tuesday, September 29th. Tune in on IG, YouTube or Zoom (registration in bio)

In collaboration with @genetix_biotx #sicklecell #genetherapy #sicklecellawareness by @sicklecell101

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21 days ago

“People with sickle cell are living full lives while carrying something that most people can’t see.”

Meet Sean Anderson, a warrior from Atlanta, Georgia, living with sickle cell disease, genotype SS.

Living with sickle cell means Sean has to be mindful of everything, the cold, dehydration, stress, exhaustion. Things that seem small to most people can quickly turn into a crisis. It means being intentional about his environment and the people he surrounds himself with.

One thing Sean wants people to understand is the reality of a pain crisis. Too often, patients are seen as pain-seeking instead of being met with the empathy they deserve for pain most people will never have to imagine.

Sickle cell hasn’t stopped Sean from building a full life, dreams, career, relationships, and goals like everyone else. He believes awareness starts with people willing to speak up, and he’s one of them.

Happy National Sickle Cell Awareness Month. Thank you, Sean, for trusting us with your story.

#sicklecell101 #sicklecell #SickleCellAwareness #NSCAM2026 by @sicklecell101

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23 days ago